All brain scans good: Could my husband still have dementia?

@adv Yes, a geriatric doctor would be a great idea! Do you have one near you? They tend to be affiliated with larger medical centers. I live in SE Michigan and we have geriatric physicians affiliated with Henry Ford Hospital and also affiliated with the University of Michigan. My mom passed away at age 93, but a geriatric physician was very helpful during a hospital stay. He provided some good ideas on med changes.

Hello @adv,

I have been reading with interest your narrative about your husband's dementia symptoms. I'm wondering if you or your doctor is familiar with Lewy Body Dementia (LBD)? It is somewhat different in the way it presents and it is often misdiagnosed for Alzheimer's or other forms of dementia. Here is a link from Mayo Clinic about the symptoms, diagnosis, and treatments for LBD, https://www.mayoclinic.org/diseases-conditions/lewy-body-dementia/symptoms-causes/syc-20352025. After you read about LBD, you might see how many of your husband's symptoms and behavior are similar. You might make a list of these similarities.

As you can see, the meds used to treat this type of dementia are different.

Have you considered a second opinion for your husband? Can you go to a Mayo Clinic facility? There are 3 Mayo Clinics (in Jacksonville, Florida, Rochester, Minnesota, and also in Arizona). If you would like to call for an appointment for any of the campuses, here is a link for information about appointments, http://mayocl.in/1mtmR63

If you would like to learn a bit more about LBD here are some more links,

Signs and symptoms of Lewy body dementia – September 3, 2020:
— https://newsnetwork.mayoclinic.org/discussion/signs-and-symptoms-of-lewy-body-dementia/

Mayo Clinic Q and A: Lewy body dementia and Alzheimer’s disease — what’s the difference? – March 4, 2017:
— https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-q-and-a-lewy-body-dementia-and-alzheimers-disease-whats-the-difference/

Leading NIH's Lewy body dementia initiative – Dec. 31, 2020:
— https://www.mayoclinic.org/medical-professionals/neurology-neurosurgery/news/leading-nihs-lewy-body-dementia-initiative/mqc-20505822

"The Lewy Body Dementia Association (LBDA) has designated Mayo Clinic as a Research Center of Excellence (RCOE). The LBDA has identified leading clinicians for advanced diagnosis and treatment and who are committed to providing advanced care, community outreach and support."
Lewy Body Dementia – Mayo Clinic Research: https://www.mayo.edu/research/labs/memory-disorders/research/lewy-body-dementia

I look forward to hearing from you again. Will you post an update?

My husband has just started the journey at Mayo. Since 2010 I started noticing changes in Bill that started concerning me. But nobody else noticed anything wrong and they were only very occasional.
By 2013 his anger was frightening, out of control, and had no apparent causes. He got terribly mad over a new jar of peanut butter, claiming it was bad - doing that with more and more food, and demanding I throw them away.
A year later we were in KY and the doctor there put him on Sertraline and it made a world of difference in the anger problem. At least for the moment. By this time he could hardy get out of his recliner and wouldn't attend any social events - even with family. He also continued to get worse with using a computer, DVD, etc. Hearing problem cropped up - hearing music that wasn't there - full songs, classical music, etc. some voices. Had me constantly checking the house and mad when I couldn't hear it. Hearing checked and told he had musical tinnitus.
Also he was getting lost more often (he had always been good at directions before).
By the end of 2019 we were in AZ - he did the driving (got lost quite a few times) and I monitored his driving the whole way. Once we were here he seemed quite glad to leave the driving to me or daughter - something he never would have done before.
All his chairs tilting to the right as he slumps that direction now. Falls started. Slurring of speech. Memory problems much worse. And God help him with computer, phone, remote - anything technical. He still demands to use his computer and do his blogs (he has written 20 books). As long as he is activity writing he seems to do okay. Otherwise problems with words and remembering people - like a son!
This year we finally got him to agree to go to Mayo. He has CKD (kidney stage 3) and can't make it to the bathroom in time (starting back in KY). Now is willing to wear Depends - before just kept on wet shorts/undies no matter what I said or did.
Anger is now worse.
And good days followed by bad - back and forth like a yoyo. Add paranoid into the the mix plus he wants me with him constantly.
Mayo is trying to get the anger issues under control with meds. Also trying to help with the sleeping issues. An appointment being set for his CKD.
Blood pressure was maintained with meds for decades - not it is dropping to 92/57. Low heart beat - think it is 58 BPM now.
So many of his symptoms seem like those listed for Lewy. Will be interesting to see what the doctors determine after all the testing. In the meantime I'm going from day to day - with a sense of humor most of the time.

I'm hoping to do that soon. The Civid virus makes me hesitant to take him out of house but I think I will soon.
Thank you for your reply

Hello @billchitwood

I'm glad that your husband is being evaluated at Mayo. I'm sure maintaining a day-to-day routine is difficult under the circumstances.

If you are interested in a Connect discussion about LBD, here is a link to a discussion, "I was recently diagnosed with LBD with Parkinsonism: Any advice?"
https://connect.mayoclinic.org/discussion/recent-lbd-diagnosis/.
You mentioned sleeping issues. Many people with LBD and other dementia-related disorders are helped with time-release melatonin.

Have you tried this? If not, you might check with his doctor at his next appointment to see if this could be added.

He tried melatonin and it didn't help at all. He was on other sleep meds through the years but still had sleep problems.

He just almost fell getting out of his lift chair (not using the lift). He is now headed for bed (4:30pm). Doctors want him to move around and get more exercise ( he is 89) but he basically has refused for decades. One excuse or another. As they told him, you rest you rust.

@billchitwood
Hi Julie,

It sounds as if you are doing all of the right things. Encouraging someone requires cooperation and that may be too difficult for him given his health issues.

I hope you find some answers as you meet with his doctors. When will you have the results of his evaluation?

Not until late September most likely - doing a major test on the 20th of September. I just have a habit of researching things as I want to "know"!
His CKD can also be tied into so many other health issues.